Category Archives: Fredericks Ataxia

My big sister is gone. She had been so close to death so many times, only to pull through and defeat it. So, when the call came Tuesday, February 28 that she’d simply stopped breathing and was no longer with us, it came as quite a shock. But she’s in a better place and no longer suffering from the limitations of her failing body.

Cindy was born in 1957 and seemed perfectly normal until she reached puberty. She began stumbling and had some difficulty with hand-eye coordination. Then my parents noticed a curvature of her spine. She was diagnosed with scoliosis. A visit to the neurosurgeon at Duke revealed a more devastating diagnosis. Cindy also had Fredericks Ataxia. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002384/. There is no cure and Cindy was told she’d never walk again after the surgery to straighten her spine.

Cindy on right. I’m on the left.

Cindy had the surgery at age 13 and she proved the doctors wrong. She did walk again. She walked unaided at first, then by holding on to walls and rails. She graduated from high school and completed one and half years of college before the disease progressed to the point where she needed assistance getting around. By age 22, she was confined to a wheelchair, although for a few more years, she was still able to stand and transfer in and out of the chair with assistance.

She lived at home and struggled for a normal life. Then about seven years ago, the disease’s progression accelerated. She could no longer bathe herself or hold a spoon and fork. So, she moved into a group home where she continued her fight. But in the last two years, she seemed to tire. The light faded from her eyes as her mind began to fail along with her body.

She’d lost total control her body. She could barely lift her chin and her speech deteriorated until she could no longer communicate with words. The loss of motor control made it impossible to communicate with her hands or via a computer. And finally,she started showing signs of dementia.

She gave up the fight this week and God called her home.

Now, Cindy no longer needs her wheelchair. She’s running with the Angels and talking God’s ear off. She was my big sister and I will miss her dearly.

My aunt wrote this beautiful tribute to her.

“CINDY”

November 3, 1957 – February 28, 2012

Though this is a time of sadness, it is also a time of joy. Cindy has transcended to a place where she can once again walk and talk and do all the things she had been unable to do for so very long. I was seven years old when Cindy was born, and I thought she was my very own real doll baby. I remember her laying on my Mama and Daddy’s bed asleep and I knew I wasn’t suppose to bother her, but I’d go and pull her toes to wake her up and run to proudly announce “she’s awake now so I can play with her”. I was so proud of her!!! I watched her in her role as oldest child. She made sure the younger ones knew who was boss!!!

One thing is certain and that is that through all her years, she remained determined and yes, quite often stubborn. As a small child, she would hold her breath until she turned blue. One motto for her would have to be “Never Give Up”, and she didn’t. She wore a body cast for about a year following surgery for scoliosis, only to find out after the cast was removed that she had Freidrich’s Ataxia. While still in high school, she faced tremendous obstacles as her body began to fail her, but she never gave up. The high school year book was dedicated to her in her senior year and she inspired more people than she ever knew. Through it all, she continued with her stubborn and determined attitude.

I can remember when she was still walking and several of us were in a store. Her gait had gotten unsteady and people would look at her as if they thought she were intoxicated. She just kept on going. She continued on to college for a while. She fought to continue walking on her own; she fought to continue talking and trying to communicate. Her family always supported Cindy’s independence, and in so doing, they made her resolve to never give up even stronger.

For years, she did beautiful needlepoint projects. She collected dolls and Christmas Village pieces. She continued to eat a regular diet, even though it became difficult, but we all know food was always on her favorite things list!

She absolutely adored her nieces and nephews and then her younger cousins when they came into her life. They were the highlight of her Christmas, Easter, and other times of family togetherness. In later years, her eyes literally sparkled when she would see them. She was happy just watching them play. Sometimes, when I would watch Cindy as she watched the kids, I would wonder if she ever held any resentment for what they could do that she no longer could. Well, to see her joy as she watched them and to hear her laughter when they would do something funny let me know she held no resentment, but a heart full of love for each one of them.

When you think of Cindy, please don’t think of what might have been. For whatever reason, she was just the way she was meant to be. And in so being, she was an inspiration to a lot of people. And she was a blessing to the children she loved so much. From being around her, they learned at an early age that we are not all blessed with perfect health. They learned how to push a wheelchair and how to help someone else. They learned that people with disabilities are just that…they are people and they deserve respect.

Even death can be viewed in a positive manner. As a quote from Henry Scott Holland, professor at Oxford University goes:

“Death is nothing at all. I have only slipped away into the next room. I am I, and you are you. Whatever we were to each other, that we still are. Call me by my old familiar name, speak to me in the easy way you always used. Wear no forced air of solemnity or sorrow.

Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that it always was. Let it be spoken without the ghost of a shadow on it. Life means all that it ever meant…There is absolutely unbroken continuity.

What is death but a negligible accident? Why should I be out of mind because I am out of sight?

I am waiting for you-for an interval-somewhere near just around the corner.

All is well.

Cindy, we all love you, and we will miss you. But you will always be in our minds and hearts. We know we now have a stubborn and determined angel watching over us.